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Update from Silvermoon

Silvermoon

Moderator
Well for any of you following my pathetic life (LOL!) I'd thought I'd post a l'il update for you....

Saw the surgeon and the gynaecologist on Monday. When they tried to do the tubal and remove the ovarian mass a month ago, apparently they couldn't visulaize anything with the laprascope as my entire pelvis is filled with scar tissue.... The probing of the abcesses showed that every one of the 983475 sores in my groin and perineal area all lead back to about two or three fistulae that connect to the bowel.....

Soooooo... looks like a colostomy it is.... Signed all the paperwork before I left the surgeon's office. He figures he can get me in in about 6 to 8 weeks - seeing as how he has to coordinate theater time with the gynae so they can both be in there together (gynae still wants to, more so in fact now, after seeing all the scarring, due tubal, as he doesn't think a pregnancy would be viable at this point in my life anyway... plus he wants to see what the heck this "mass" is on the ovary...) ....

But they want me to taper off the prednisone before surgery (of course) so back to being tired and no energy and pain in my groin so bad I can't walk some days.... oh well, I guess that is what pain pills are for...LOL!

Starting new job (well, same job; different community) on Monday, so that should keep me occupied and out of trouble until the big "S" day.... Plus finishing up the current course I am taking and I registered to start new course November 1st... should keep me going for a while. :) :)

Hope the rest of you are taking care of yourselves.

Squishy hugs to you all......
 

Cat-a-Tonic

Super Moderator
Hi Silver, glad to hear from you. I hope everything goes well with your new job and of course the surgery. If you don't mind me asking, is it going to be a temporary or permanent colostomy? Either way, I hope it makes things better for you. I don't have an ostomy, but from everything I've read on this forum, it usually seems to make life much better. I hope it does for you! Good luck!
 
(((Hugs))) Glad to hear from you, it's been awhile! :p

Good luck to you on your surgery, I'll keep you in my thoughts and prayers that the day comes soon so you won't have to endure so much pain and for a swift recovery! I hear you on the pain pills, I've been having to take some for my severe arthritis pain. Can't move around without them! Keep in touch and take care!
 

Entchen

Chief Dandelion Picker
Hi Silvermoon: Lots of changes coming up for you. Sending warm thoughts that you'll get through the next several weeks okay and start finding relief soon. Hope all goes well.
 

Crohn's 35

Inactive Account
:moon: Hey Silvermoon, I wondered how you have been doing and we miss you being on her cause you are such an amazing help on this forum.

I know your surgery will be just fine, and when you have pain you have to control it...hopefully you will get some relief soon.

Good luck starting your job and hang in there, you are an inspiration to all of us! Keep us updated ok> Big squishy hugs back!:rosette2:
 

Jennifer

Adminstrator
Staff member
Location
SLO
Two or three fistulae? I thought there were symptoms that one would feel or maybe I'm wrong (I've never had one). Did you have no symptoms or were your other symptoms overshadowing the fistulae? I suppose that's possible. I'm so sorry Silver. :( My boyfriend always says, "if it's not one thing its another." Not very uplifting I know but at least you know about it and will soon know more about that growth too (hoping for a simple removal and nothing more). *hugs* for you.
 

DustyKat

Super Moderator
Hey Silver, :bigwave:

You are one incredible lady!!! What an inspiration you are. I'm thinking about you and hoping all goes well with your surgery. I hope the lead up to it isn't too bad.

Sending you loads hugs.....................

:hug::hug::hug::hug::hug::hug::hug::hug::hug::hug:

Dusty. :)
 

Astra

Moderator
:goodluck: Silver my friend, you are one gawjus girl!

and besta luck too with your new job!

keep in touch and take care
love as always
Joan xxx
 

Dallies

Dragonfly
Hi Silvermoon, lovely to hear from you. Best of the luck with the surgery and your new job. Thinking of you and sending you a big hug xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 

Silvermoon

Moderator
Thanks all, you guys are the bestest. :) *Silver wipes a small tear from her eye*

Crabby: lol you ask such a very good question...one I have asking for three years.... When these sores first started showing up (about 10 years ago), I asked the doctors then "Could they be fistulae?" and everyone from my internalist to dermatologists said "Uh uh.... they aren't presenting like 'normal' fistulae, and we can't see them in the bowel, and they don't really bother you bad enough to be fistulae....so they aren't fistulae". So for THREE years (when they started getting to the point where I literally couldn't deal with them anymore and they were afecting my life...) we have been trying to fix them with anitbiotics.... bring them under control for a week or two until they "flare" again... and eventually, as does happen, the antibiotics just quit working....

Until FINALLY I found a general practitioner who said..."I don't THINK they are, but lets send you to a surgeon and see what he says." ... and now I finally have the diagnosis I came up with 3 - 5 years ago....

And the most frustrating part of that whole senario is, I KNOW how the system works, and I still couldn't get anything done...even trying to be "sneaky" about it and go at it from a "professional" standpoint rather than a "patient" one.... Those of you who are trying to get answers and cannot who are outside the system... I am in awe of you... how you haven't shot yourself or, better yet, someone else, is beyond me, and I commend you for sticking to it and not ever giving up. It may take some time...but stick with it... the answers will come.

Until then, if you need a shoulder to cry on... I am here....
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Silver, I'm sorry I missed this til now!! I hope you get the relief you deserve from all this bs you've been dealing with. We all miss you when you're not around!!! Not to mention the much needed educated advice you give!!! Thinkin' about you Silver...as always!!
 
Hi Silvermoon, I hope you finally get the relief you so deserve..... I can relate to the frustration, trying to get some answers... take care and I hope you are feeling better soon. I hope that surgery helps you out...
 

Nyx

Moderator
How did I miss this thread??? Wow! Sorry to hear about your troubles Silver! I have a colostomy, so any questions you have, feel free to ask! (It's really not that bad...just a hint, after the surgery, keep the catheter in as long as you can...you'll be amazed that you get to stay in bed for days on end and not have to go to the bathroom!!!! lol).

But seriously, good luck, and I hope your surgery makes you feel as good as mine did :)...Welcome to the club!
 
Silvermoon,

Good luck with your surgery and the new job. I'll be praying for your fast recovery and thank god for pain meds.

Lots of hugs..... :ghug:


:goodluck:
 
Silvermoon,

I hope that everything works out for you. Good luck on your job. I hope that you are pain and stress-free. :hug:
 
Hey Silver:bigwave:
I'm fairly new here, but wanted to extend my regards. You have a great perspective on things, very inspirational. I'm glad you're finally going to get some relief. Good Luck with both of your new endeavors.:goodluck:
 
Hiya Silver, Hope that you get the medical attention you need real soon, you have been a wonderfully supportive person. Truly genuine and selfless. I really hope you are feeling much much better really soon.
 

Silvermoon

Moderator
Thank you so much for all your warm wishes and support... it reallly does mean so much to me. :) :blush:

GW: Becareful back there! It's a little uncontrolable ATM and I never know where it might spray!! LMAO!

Cindy: I already have plans to steal catheters from work so I can spend days on end in bed after I get out of the hospital... I figure they will be great on road trips too... can drive for days without having to stop! LMAO!! :wink:

Today is my third day in the "new" job, and so far it is going awesome! Of course, as my hubby said to me "Babe, you find every new position awesome... it's after a few months that you get bored and start looking for your next "adventure"!!" LMAO! But it's all good. The manager has some new things she is throwing at me, and has a long term plan to keep me interested an learning for a few years to come, so not sure how I am going to get bored here!

And even though I am weaning off the pred (down to 15mg this week) I am still relatively pain free... I am very tired at the end of the day, but that could just be the "let down" after an exciting new day at work....

So far so good... hopefully things stay somewhat reasonable until surgery time.....

Hope you all are trying to take care of yourselves. Even though I haven't been here much lately, I think of you all lots and often. Wonderful to see all the newbies, and hopefully you all are getting the support and answers you need. Feel free to PM me if you need some help.

Big squishy hugs....
 
Silvermoon,

It's great to hear all this, I'm so happy for you and hope you keep loving your job. Keep feeling better, and the doc started to taper me down on my steroids today, yeah!!!! :biggrin:

:emot-dance:
 
Glad to see things are going well for you Silver! ((Hugs)) You deserve all the best and it's about time things are looking up for you!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Of course, as my hubby said to me "Babe, you find every new position awesome...
I don't know how many positions there are, but for his sake, I hope you keep finding them :ylol2:. Oh come on, you were all thinking the same thing!!!:)

Seriously though Silver, it is great to hear you so upbeat!! I hope things continue well for you for an extremely long time, now and after the surgery!!
 
:ybatty:
I'm quite new to here but just wanted to wish you well in your surgery and I'm glad that your settling in to your new job.you seem like a very positive person and it looks like it rubs off on the rest of us!!!
Nice to meet you shell:uk_flag:
 
Hey Silvermoon, Thinking about you and hope that things are continuing to look up for you. You are an amazingly strong and positive person, who has helped so very many of us here. Keep it up sweetheart we are all hoping for the very best for you.
 

Silvermoon

Moderator
I don't know how many positions there are, but for his sake, I hope you keep finding them :ylol2:. Oh come on, you were all thinking the same thing!!!:)


LOL! Yeah... well.... ahem.... :redface: ..... moving on.... :wink:

Thanks for the warm wishes, gang. It really means alot to me... more than you know... to sign on and find someone has been thinkin' about you... :blush:

The job is still going great, but very busy with 'flu season upon us. I forgot what is was like to work in a community of 1500 people (as opposed to about 300) and try and get flu shots to everyone!

In the meantime, no word yet on a surgery date, and I have tapered off my prednisone, so between crazy busy days and no prednisone to keep me "boosted" I come home most nights and just crash ont he couch for a few hours and then drag my sorry (sore?) ass to bed... lol.

But hangin' in there and knowing that soon the end of tunnel will be in veiw. Thinking lots of all you and wishing you well. Stay healthy! Get your flu shots! (those of you that can, that is...)

Lots of love to you all........ :rosette2:
 

Crohn's 35

Inactive Account
Hey Silver, I have to say you are in good spirits! I know the waiting game isnt fun, but I am sure you will hear something soon. Yeah Canadian doctors are not quick but they do help ...it is just the system. I am going to get my flu shot, but not sure when it starts around here. Keep us updated. I think about you lots and hope you will get your surgery soon! ((( big hugs))
 

Entchen

Chief Dandelion Picker
Re. flu shot, yes ma'am! I'm hoping the U of A will have a clinic again this year, because sometimes people with staff cards get to cut in line. :lol2:

Hope today went well for you!!! Get all the rest and sleep that you need, and maybe a little extra even, if you have the time!
 

DustyKat

Super Moderator
I don't know how many positions there are, but for his sake, I hope you keep finding them :ylol2:. Oh come on, you were all thinking the same thing!!!:)
Well I for one wasn't!!! Tch, tch Dex, you really should pick your mind up out of the gutter! Goodness me I think I'm blushing........................:blush::blush:

Yay! So good to hear from you Silver. I'm so happy to read that you are still managing OK. Hope you get a surgery date soon so you can move to focusing on that. Thinking about my buddy from across the pond..........:hug::hug::hug:

Lots a love, :):):)
Dusty
 

Silvermoon

Moderator
Thought I'd post a quick update....

STILL waiting for a surgery date, but they are "promising" sometime before Christmas, so seeing as how that's only about 4 weeks away now.... *Silver crosses her fingers*....

In the meantime, I have finished my first course on my way to my Master's degree and managed to pull off an A-, so I figured that was alright. :)

Work is very good and very busy (thank goodness), so I am able to keep myself occupied and have less time to think about feeling sorry for myself... LOL! However, it is cold and flu season, and I woke up with a doozy of a head cold this morning (*Silver shoots daggers out of her eyes at her hubby*), but hopefully that is all it settles in as, and then I should be good to go for the rest of the winter.... Watch though.... tomorrow I will get the phone call to go for surgery and then they will postpone it cause of this stupid cold!!! LOL! Oh well, hopefully I will be over the worst if not all of it before surgery.

In the meantime, although I haven't been posting much :redface: I have been keeping up with all the posts and newbies... a warm welcome to you guys and hopefully you find the support and encouragement here that I have found over the past 6 months (goodness... has it only been that long?!?! I feel like I have known some of you forever....).


To all of you going through tough spots right now, hang in there.... and big squishy cyber-so-I-don't-give-you-my-cold-germs-in-real-life hugs.........

:rosette2:
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Good to hear from you Silver!! I hope the surgery comes soon and goes well!! It does seem like so much longer than 6 mos. doesn't it?? All the best!!
 

DustyKat

Super Moderator
Hey Silver, :bigwave:

So good to hear from you. That's a bugger that you are still waiting for your surgery, I sure hope they live up to their promise of before christmas!

WOOHOO and congrats on the course result. What a fab achievement and even more so considering your health.

:mbh::mbh:


Look after yourself bud and keep us posted!

Lots of love, :hug:
Dusty
 
I'm new here at the forum and I've been reading your post, Silver.

It's wonderful that it's going so well with your new job.

I read that you're waiting for surgery and the waiting time is not fun, but with keeping up with your job and keeping yourself busy is so helpful.

cyber hugs to you. :rosette2:
 

Silvermoon

Moderator
Thanks guys :redface:

And HI MARGIE!! Welcome to our little home on the 'Net! Thank you so much for your kind words! :redface: Big squishy cyber hugs right back at ya!


So I called the surgeon's office again this morning, and although I am only about 6 on the "pending" list, December's schedule looks pretty full of cancer patients (we seem to be having a "wave" of cancer in the area :( ), it looks like I won't be going for surgery until into the New Year....

I'm kinda starting to get down about this whole ordeal.... Maybe it is time to just say "To heck with it" and just get the family GP to medicate me into oblivion... at least then I wouldn't care about the pain... and I could SLEEP..... Some days I feel like, between the cold that's hanging on and the fitulas that are draining, that there shouldn't be anything left in my body TO drain out....

So after I had my little "pity party" this morning and cried after the phone call... I wiped off my snotty nose and made an appt with the local GP for Thursday.... maybe between the two of us with can come up with a temporary solution to get my through Christmas.....

Sorry for the little "downer" post... and thanks for haning in there with me....

Sqishy hugs and lots of love from The Moon....
 
Sorry to hear that you are going through such a terrible time, sending lots of strength & hope your way, you are a tremendously strong lady and will beat this! Here's a big ole hug from Jerman ((((((hugs)))))
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey Silver, I hope you and the gp can figure something out. Sorry for the long wait!! It seems no hc system is perfect. Good to hear from you and feel better soon!!
 
Sorry that you did not get in for surgery before christmas silver... I am praying for you and hoping they get you in soon. congrats on doing so good with you course :)
try to hang in there, I know it is easier said then done. Dont give up Hope..
You are in my thoughts and prayers

Sending you lots of hugs...
 

DustyKat

Super Moderator
Oh Silver that sucks!

How did the appointment with the GP go? I hope you were both able to come up with something to help you through.

Thinking of you always buddy, :hug:
Dusty
 

Silvermoon

Moderator
So after 50mg of prednisone a day for the past two weeks, I finally couln't take it this morning and phoned OR booking and cried and screamed until someone finally booked a surgery date for me. January 25, 2011 is finally the big day. Now, to take words of advise from a very special lady I knew (I miss you, MisB), just one day at a time now......

Hope the rest of you are keeping well. Thinking of you all over the Christmas Holidays......
 

Astra

Moderator
Hey Silver

So good to hear from you!
That's great advice from our Bev, and that's what you've got to do now hun!
It's only 5 weeks, so enjoy your Christmas and I hope it's a pain free one!
Don't suffer in silence tho, come on and vent wheneva, we're here for you, always!
Take care
xxx
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Finally, Silver!! I'm sorry it's taken so long and that you have to spend the holidays with this chronic pain you've been having. I've seen your posts on FB lately. They are obviously not coming from our normal, sweet Silver!! Good luck, I hope seeing the light at the end of that looooong tunnel gives you some relief until then.
 

DustyKat

Super Moderator
Hey buddy,

So great to hear you have finally have a date!, just a shame it's not until the end of January. :( I so hope you can find some relief to get through the holidays and onto the 25th. Sending loads of super squishy hugs your way.........

:hug::hug::hug::hug::hug::hug::hug::hug:

Lots of love, :)
Dusty
 
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